VF in the News

Ed’s Story

A Profile of Ed 

We peppered the doctor with questions about a disease that was a total mystery to us. What does PAN mean? What is it doing to her body? How do you treat a PAN patient? How did she get it? What’s the life expectancy of a PAN patient?

A week earlier we had brought my Mom, Florence, into the hospital in serious condition. Nearly three months of tests and evaluations couldn’t adequately explain the symptoms that continued to grow worse. Shortness of breath, terrible headaches, a persistent, low-grade fever and abdominal pains had taken their toll on her. Now she was at the point of collapse.

Her kidneys had all but ceased to function. Her blood pressure was unusually and dangerously high. Something was obviously wrong but the doctors couldn’t identify the cause. She was quickly placed on dialysis three days a week.

A week later a biopsy on her kidney revealed the underlying illness–classic Polyarteritis Nodosa. She was placed on an aggressive course of Cytoxan and prednisone. Her doctor told us that in her whole career she had never treated a patient with this disease. It became clear that unlike cancer, PAN was not widely known or understood.

My Mom’s health quickly deteriorated throughout August. The Catch-22 of treatment was damning. Treating PAN required suppressing the body’s immune system that left her open to infection. Unfortunately she contracted such an infection and her ability to fight it was gone. On September 12, 1998 Florence passed away from complications of PAN.

Ed remembered the frustration at not finding adequate information about PAN when his Mom was ill so he decided to create a website–a central source of information about the disease. “Honestly, the site was initially created as a web design for a class project. I actually forgot it was out there. A couple of weeks later I checked the site only to find 60 people had visited the site and left messages in my guest book. They were thankful to find a site with this info. That was my awakening to the real need for the PAN site.”

Ed learned that visitors needed more than just information. They wanted to connect with other patients. ” I remember when my mom was diagnosed, one of the first questions she asked was if anyone else out there had the disease. She wanted to talk to someone who was going through the same thing. At that time there wasn’t such a forum. Now, however, I realized I could fill that need. The PAN suppport mailing list became that venue to allow members to connect with each other.”

Ed checks his email every evening and on Sunday evening he moderates chat sessions that give PAN patients the opportunity to ask questions of doctors and medical researchers. The PAN Research and Support Network draws more than 688 PAN patients, their families and friends, and physicians and researchers.

Ed has never charged for participation nor has he ever earned a penny from the work he does. He feels this is what he has been called to do – to help others.

Ed was motivated to join the VF because he felt the VF Education Council would be the best way to not only increase awareness of PAN, but for ALL vasculitis diseases. There’s a huge challenge ahead to educate the public about these diseases and he simply felt this was one of the best venues to do so.

Although Ed is working on formulating his specific goals he is willing to put his skills to work for the cause. One of his personal goals is to work with Dick Burns and Christy Abele to help increase awareness about the Vasculitis Foundation support groups throughout the world. He has already started a campaign to get the word out in his PAN Network that such groups are out there — maybe in their own city! He feels it would be valuable for other group leaders to let their organizations know about these regional support groups and encourage them to not only attend, but start a new one.

Ed would like readers to know there is a small (but growing) group of dedicated people who are working intensely behind the scenes to make vasculitis a household word and to get the word out about these diseases.

The evolution of Ed’s PAN Network is amazing and it shows the challenge that lies ahead for the VF as well. When he first created the PAN Network website he didn’t even know if there were even three others out there with this disease. Now, he gets more members every week who have just been diagnosed. A week doesn’t go by that he doesn’t get an email or phone call from someone who has discovered our resource and is immensely grateful. Patient’s lives have been changed–maybe saved– because we have shared invaluable information, connected someone to a doctor or clinic, or simply provided a forum where patients can connect with each other.

by Kathy Savickas

Published: December 2006

To read more stories, please visit the Vasculitis Stories landing page.